Farewell, Onfi

Dear Clobazam,

Well, it’s been a long road, Clobazam. May I call you Onfi? We’ve known each other long enough now that I feel like we can use our informal names. You can call me Dave.

As I was saying, it’s been a long road. We’ve known each other for more than eight years. Our doctor introduced us when our son was in bad shape. She said although you were relatively new, you had been known to help other children like our son, and, let’s face it, we weren’t in a position to turn away anything that could potentially save him.

I don’t need to tell you, but the list of side effects with benzodiazepines is intimidating, especially for children. There was also the matter of cost since our insurance didn’t fully cover you. But we were trying to save our son, so we’d pay anything, and we were fortunate to find the National Organization for Rare Disorders that helped us.

While we were trying to figure out the financials and come to terms with the side effects, we started to see a reduction in seizures. As messy as everything was, that was the light that we followed. As you know, we had tried so many other medications, and they either didn’t help or made things worse or came along with catastrophic side effects like your cousin Klonopin or the nefarious Keppra.

When we started to see behavior issues after increasing your dose, we feared the worst. What Keppra had done nearly broke us, and it was happening again with you. The thought that the only way to control the seizures was to let the emotional regulation get out of control was a choice I didn’t know that I could make. Fortunately, backing off on how much of you my son used brought him back to us—too much of a good thing, as they say.

We made a few adjustments over the years regarding how much of you and when my son needed you. Eventually, you were only required at night and became part of our nighttime routine, like tea and bedtime stories. Even though you couldn’t make all his seizures go away, you gave him a chance at a much better, less seizure-filled sleep which also resulted in a better quality of life.

When our doctor brought up the idea of letting you go, I was nervous and skeptical. It’s not that I forgot the dangers of long-term use, but you were one thing I knew had worked. She said we would take our time to make sure the separation didn’t cause more stress or seizures. It would be a long goodbye.

About halfway through, we noticed a few changes in our son. The seizures mostly stayed the same, but he was always exhausted and sometimes irritable. We paused the wean for a few weeks until, fortunately, we saw our son stabilize. Even though it turned a ten-week wean into a few months, the extra precaution was warranted, given our track record.

Once we continued to reduce the dosage, we didn’t stop until it was done. When I filled his medicine containers, I did it for the first time in a long time without adding any of you to the nighttime compartment.

And here we are. We’re a few weeks past our separation. Our son is doing well. We increased the dosage of a different medicine to help compensate for not being under your…protection? Influence? I don’t know what the right word is.

We may not need you now, but you will always have been a part of our journey and one reason why our son has made it to where he is today. For that, I am grateful.



6 thoughts on “Farewell, Onfi”

  1. Seeing Onfi in my inbox made me jump to read the article. It’s been a while since I thought about it. Happy to hear you were able to get off the Onfi without incident. Once our son was stable on keto we weaned him off his three meds with Onfi being the last. Like you, that was the one that seemed to work the best (but ultimately his body adapted and it didn’t any more). He was on for about a year. A few weeks after he was fully off, he had these terrible fears, bordering on paranoia. It wasn’t until someone on a FB group mentioned his behavior was “benzo-y” that we made the connection to Onfi. We probably weened too quickly? While we didn’t see many behavior problems while he was taking Onfi, or even during the ween, it was when he was off where we had several weeks of strange irrational fears which eventually went away.

    We did not fully appreciate what Onfi was or how it could affect our son when it was offered – we were just happy to hold his otherwise uncontrollable seizures at bay.

    Love your blog Dave – thanks for writing about this like you do.

    1. Same boat; we didn’t appreciate how it could affect him, just that it helped with his seizures in a very dark time. I’m really glad those effects went away for your son. Thank you for sharing, for reading, and for your kind words. All the best to you and your family. ~Dave

  2. Hello Dave, I have followed your blog for years. I am happy to see your son’s health and well being has improved. My son is now about to be 21 yrs old. He started Onfi last summer due to break through seizures. It allowed him to decrease lamictal which was at a very high dose and causing ongoing dizziness which the dr. said to abate with food ( it did not always work). He still hs break through seizures but overall his mood and thinking seems better on Onfi. My son takes it at night. The dr. wanted him to take a small dose in the morning but my son hasn’t wanted to start it. After reading your blog, I am wondering why did your doctor recommended discontinuing? Due to long term side effects such as cognitive problems? Thank you! Wishing your family well!

    1. Hi Kristin! It was partially how long he was on Onfi (~8 years), those side effects, and that he was big enough where we could adjust his other meds (still on Lamictal and Felbamate, plus modified Atkins). My son’s seizures are largely nocturnal these days, which is why we had the Onfi only at night…it helped remove at least some of the fogginess he experienced during the day when he had a morning dose, too. He’s been off it for a few weeks now, and I don’t notice any change in cognitive or processing challenges, but we also haven’t seen an increase in seizures, so there’s that. My son is only 14 and doesn’t really a) know the difference since he’s been on these meds for every so b) doesn’t have the language to describe what he’s feeling on these meds all the time. Your son may have a better handle on how it makes him feel during the day. Happy to answer any more questions, you can e-mail me at dave@epilepsydad.com ~Dave

  3. Hi, Dave!

    You have done an amazing job of sharing your experience with this medication. Many people can write about the dosage of pills and the pros and cons of taking them, but you added a lot of emotion to this story, which is a rare thing.

    Thank you for spreading epilepsy awareness in such a personal and profound way.

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